denial

  1. A

    Hospice

    I had posted earlier about denial among family members about my PALS ( 79 year old woman diagnosed in 2013 with ALS). I took her to the clinic yesterday. Her FVC is 36. She has decent strength in her hands and forearms; voice is strong; swallowing is worse. The neurologist recommended...
  2. A

    Family Members in Denial

    All -- My mother is in her late 70's, has no ability to move her legs and has limited use of her arms, which means she has limited strength in her hands and forearms and that's it. Her breathing is okay but below 50 percent. She is only beginning to have trouble swallowing. She lives with...
  3. Kristina1

    denial/acceptance

    This is mainly a rant. I'm frustrated by emotional lack of acceptance of this diagnosis. Intellectually I am there, but emotionally I keep torturing myself by over-analyzing everything and thinking up reasons why maybe it could be wrong. Part of it is that I am not disabled by this yet...
  4. M

    Now questioning my neuro problems...

    Hi all. I am a young female who has been having on going neuro problems which now seem to be getting worse. I presented to my neurologist a few years back with spastic parapasesis. They were concerned as I was told my neuro exam was very abnormal. I have spasticity and weakness, muscle wasting...
  5. M

    Need advice regarding my mother's situation

    I would like to share my mother’s story with you in the hopes that I can receive advice regarding my family’s situation. This might seem like a very ‘dry’ explanation of the situation, but I assure you that there are a lot of emotions involved My aim is to give the clearest and most objective...
  6. kellykago

    Newly diagnosed Social Security Denied

    I was diagnosed in Dec 2016 and I applied for social security right away. I received a denial letter already stating "Though you do have discomfort, the evidence shows you are still ale to move about and to use your arms, hands and legs in a satisfactory manner." and "your condition results in...
  7. H

    Dad and me

    So recently like I said in my last thread I've been struggling and I know my dad is struggling more. It makes me feel horrible to get upset in front of him because he is the one with this disease, not me. I am sick at the thought of losing my dad but he is living with this not me and if he can...
  8. D

    Praying it's not true

    Last Thursday, my 60 yr old husband (husband of 6 weeks, I should add!) was told by a neurologist that he has ALS. His only symptom is weakness in one hand which came on suddenly in June 2016. At that time, his PCP ordered an MRI and he was promptly sent to a neurosurgeon who diagnosed him with...
  9. blufftongal

    Still in shock

    My husband of 50 years has just been diagnosed with ALS. He has had symptoms the last 3 years. First started with fasciculations. I truly believed it was nothing. At that time doctors still had no true diagnosis. These last 3 months his symptoms are getting worse. I was so much in denial I...
  10. A

    New here... PLEASE help me understand! I'm reaching desperation.

    Hi all, My name is Alaura. My very dear grandmother is battling MND. She has a very slowly progressing form of MND and has been battling for over 12 years. Which from my very general understanding is rare as some only get a few months. She just celebrated her 80th birthday last week. The thing...
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